Old 11-16-2004, 02:07 PM #1 (permalink)
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Default Need Advice Please

I was wondering if I could get some advice. My father in-law was diagnosed almost one year ago now with ALS. He seems to be progressing very quickly? He is no longer able to walk on his own and is very weak. My husband and I are talking about moving in with him so he can stay at home rather then go into a long term care facility. Family members are taking turns right now staying with him during the day and night but we can't keep it up for much longer. Along with the ALS he also has dementia which takes away his ability to think logically and also effects his memory. I know it will be very difficult as I also have a year old baby. I am wondering if I could get some advice and support. I am just not completely sure I know what to expect. This forum is wonderful! Thank you to everyone who keeps it going.
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Old 11-16-2004, 04:43 PM #2 (permalink)
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I know how alone and how overwhelming this can all be. My mother passed away 5 years ago and I cared for her for 2 years. It is very draining. Just want you to know we are out here for you and that this is a safe place to vent. I just recently joined on but have been very impressed by the support that is offered. If you need a friend just holler!
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Old 11-16-2004, 05:31 PM #3 (permalink)
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CDEE- You don't say where you are located but If you haven't registered with the nearest branch of the ALS Society that would be the first thing to do. They have many programs to help Caregivers and PALS(Persons with ALS) Depending on where you live you may be able to use the services of the Community Care Access Center . In Peel they have Occupational,Physio, Psychological and other counsellors to help people dealing with this and many other serious diseases. They can put you in touch with other agencies that can offer support. I am sorry for your fathers diagnosis and his rapid progression. Hopefully you will be able to take on the responsibility of caring for him. Most of the people here will agree that home care is the best thing, not the easiest but better for the patient. Feel free to ask anything. There are a lot of people here that care.
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Old 11-16-2004, 05:31 PM #4 (permalink)
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Hi CDEE:

If your father-in-law has been diagnosed then you should have he neurologist who diagnosed him to refer him to one of the ALS clinics for help. In addition, his family M.D. should be contacted to have help via an occupational therapist, Attendant Care and/or Home Care. If you are writing from Ontario these services are available to you.

We live in a very rural community outside of Toronto and, while we were referred to a clinic in the city, there was quite a bit of home help available locally. My wife had ALS and stayed home with us for 4 years. I rarely missed a day of work. Check with his MD...

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Old 11-16-2004, 07:49 PM #5 (permalink)
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Thanks for your replies. My father in-law goes to see Dr. Strong in London. He is very reluctant to except help from people other then family members. That may change in the near future as things seem to be getting harder for him. I am so happy I found this forum! I have never been on one before and almost didn't post but I am very glad I did. I think we can all learn from each others experiences as well as support each other along the way. Thanks again everyone.
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Old 11-16-2004, 08:20 PM #6 (permalink)
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CDEE, it appears one of the criteria of joining is to share your drink of choice. You will see that there is a weekly battle as to preference, and discussion.
You will also find tons of information here, and people who are very caring.
I can't imagine how hard this is, and adding dementia to the equation is even more difficult.
Heed the words of the group, they are the ones thick in the middle of this, learn every day, and share with all.

To the forum, when I first joined in it was pretty quiet, it seems now each day there is a new member adding in, which is wonderful, sharing their stories, helping one another, but is ALS becoming an epidemic?

Also, I heard on the news there is a new potential drug for MS..anyone heard about it? Could it in any way help ALS patients? Just curious.

Yeah, I kicked the kids off to get caught up here....miracle, new keyboard with some fancy buttons...looks like I could launch a rocket ship with all the commands.
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Old 11-16-2004, 09:34 PM #7 (permalink)
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Default what to do

I am very aware of what you and your husband are going through, my dad died just over 1 yr ago, after a very rapid (15 month) decline after
ALS diagnosis. He too was very reluctant to accept help from anyone-- being a proud Saskatchewan farmer! He was able to stay at home the whole time and was mostly cared for by our family with some homecare help. It helped a lot that myself and 2 of my sisters were RN's and my 3 rd sister had a lot of experience working with disabled in group homes etc. My advice to you and your husband is get the family on the same page re- his plan of care-- discuss what his wishes are about remaining at home etc and how feasible that is-- with dementia already that could be very difficult, also it's important to discuss -- before he needs it-- if he plans a feeding tube, ventilator assistance etc. My dad descided early on he didn't want those and remained firm in those desisions and the family respected those wishes, he and my mother also put in on paper. It's important for the family to support each other and really avoid taking stress out on each other, although sometimes it's so easy to do.... this will be a very difficult time with no easy solutions but it can also be an amazing time as a family, discovering hidden strenghts in yourselves and each other. My thoughts and prayers are with you.
Laureen
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Old 11-17-2004, 12:18 PM #8 (permalink)
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Thanks Laureen...

Best post for caregivers that I've seen on this site yet! I lost my wife almost 4 years ago and agree with you completely!

T.
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Old 11-17-2004, 06:13 PM #9 (permalink)
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It's good to see we have a couple of new people posting. CDEE and Lauren, welcome. Don't forget to check out the introduction page if you're able. This group really seems to be getting stronger and stronger. -me-
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Old 11-18-2004, 06:08 AM #10 (permalink)
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Hello,
I spent yesterday with my father in-law and it went well. It's so hard to see him like this, so different from the way he was. He is very happy that my husband and I will be moving in with him. The first thing he asked with a big smile was if we would be bringing the baby. I think the baby takes his mind off things.
A friend of mine called last night so I was telling her about everything. She really didn't have a good thing to say about us moving in with my father in-law. I know she is just worried about me but she talked like she really doesn't think we can do it. I felt like the whole conversation was me trying to justify the decision. She works in a long term care facility and thinks that is the best choice. I have to wonder what she would do if it was her family? Don't get me wrong, I know this will be very hard on us. I think it's the best thing and in the long run we will be happy to know that he was able to stay home with family who love him very much. I also know that I can't do it alone. We will need to get some additional support for bath care and other stuff.
I am I being realistic?
Anyway, thanks for listening. I appreciate all the advice and the opportunity to vent very much. Drink of choice is vodka although it's been about two years. Now that I am not nursing I will be able to enjoy a drink again......soon! HA HA
Hope everyone is doing well, you are all in my prayers everyday. Thanks again.
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Old 11-18-2004, 12:58 PM #11 (permalink)
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The hardest part for me (about being a PALS) is feeling like I'm a burden (and the guilt associated with it) on my loved ones.
Your friend is WRONG in my opinion.
It won't be easy for you to move in and take care of him. I believe the emotional benefits of being able to see the baby everyday and being surrounded by people who love him, far outweigh any reasons for putting him into a "home".
I know that, if I didn't have such a wonderful support system of family and friends here in Calgary, the difficult situation I'm in, would be unbearable.
I'm Thankful that I get to see my wife (Andrea) and sons (Tanner (6) and Austin (4)) EVERYDAY. They give me the strength to live and the will to go on.
Miracles happen everyday...and being surrounded by the people your father-in-law loves, is the best way to start your miracle.
It won't be easy...but the reward(s) will be great.

btw - I'm a beer & red wine (used to make my own)lover. Gimme a bottle of "Fat Bastard" (no joke...http://www.fatbastardwine.com/about.htm) anytime. Their Shiraz is awesome!
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Old 11-18-2004, 02:56 PM #12 (permalink)
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Mike...I have to say how amazing you are to have such a great outlook on your life. I highly doubt you are a burden at all to those who love you. I too live in Calgary and I would imagine you are hooked up with the ALS clinic here. They are awesome people there! Good luck Mike and I tottaly agree with your choice of Fat Bastard! Great wine! Stil prefer a dark beer though!
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Old 11-18-2004, 07:46 PM #13 (permalink)
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Geez and here I thought that when people said Fat Bastard they were talking about me. And now they have named a wine after me.
I'll have to hunt some down. I usually make/bottle my own but it might be worth it as a conversation piece.
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Old 11-18-2004, 09:54 PM #14 (permalink)
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If this ever gets posted it will be a miracle. Wonder if it is sympatico or my computer, it is so slow.

Al, 10 points to you for the wine come back...very good. I can't believe there is a wine named that.

I don't have the topic review below, it won't come up, but to Mike, yes, I can see how you would feel a burden to people. Anyone would. But it is not your fault, and I am with your thinking if you are with people you love, the comfort level that can bring to ones life, can only keep them going. Ultimately it is in God's hands, and as a catholic, from reading all these postings, and trying to deal with my situation, I struggle to understand why he takes wonderful human beings who have so much to give, and puts them where all of you are today. My friend is one of the best fathers I have ever seen in my life; a person who would give his soul to any one in need. Why God gives people like him, people like all of you on this website, the challenges faced is beyond me.
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Old 11-18-2004, 11:07 PM #15 (permalink)
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Hi Gang,

Heck, when you guys were talking about Fat Bastard, I thought you were talking about my boss! Hope he doesn't read this forum. ha.. New one for me to search out too. My wine of choice is Coli Albani, white Italian wine. mmmmm...very good, Ted, try this one. I know you prefer red, but maybe I can convert you to a little white tasting. Really, check it out. Isn't the weather been fantastic? What the heck are we going to do when it turns cold? We will all have to get together and snuggle up to keep warm. Hope everyone is well. The pastor came over today and had a visit with Henry and prayed with him. It was really emotional, but, still very calming at the same time if you know what I mean. Hope everyone else has the same support. Going to bed now. This "old broad" is tired and i need my zzzzz's. Actually Henry slept through the night last night. First time in a long, long time. Melissa, you are a very bright, talented, and loving woman, and that was a compliment that you want to be like me, but, do you really want to be wearing a red stringed bikini at 50? ha ha... Could be worse, I could be wearing a flowered komono! Have a good night all, talk tommorrow.

zzzzzzzzzzzz Carol
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